“DOCTOR Mbuyi” as she usually calls me “I am dying because I really can’t understand what is happening to me, my whole body is paining, I feel weak and just very sick.”
These are the words that a lady who is in her early 40s always tells me whenever she calls me. She would then continue, “I have done all the tests, nothing really comes up abnormal, but I know I am not well.”
She would go on: “My head is always paining despite me taking all types of painkillers. I have this unbearable sensation accompanied with pain pulling behind my neck down to my back. Then most times I feel suffocated, I just run out of breath, I often feel so dizzy, almost passing out and I am always tired. I have tried to explain to my family what I am going through but they think I am lying, or just being delusional, they are even suggesting I see a witch doctor. Please help me, what is happening to me?”
To protect her identity, I will call this lady Zoena. Indeed all the tests Zoena has done have come out normal. I had a chance to look at them and also get expert opinion on them.
She clearly has Long Covid; She is a “Long Hauler” one who had Covid almost one year ago. Unfortunately, there is just no definite test that can be done on her to prove this and hence very difficult to attend to her and make the family understand what she is experiencing. It is like she is suffering from an invisible disease.
Zoena is not alone in this, too many people with long Covid are experiencing the similar problems.
As we continue on this long journey of “Long Haulers,” I will be sharing some experiences faced by some of the patients I come across and also of those from across the globe.
I hope this will help others who have not yet recognised that they have this problem to consider it and also I hope to make awareness of how much of the problem this phenomenon is and just how far reaching Covid-19 can go even in its mildest of forms.
Long Covid is a very complicated phenomenon that is baffling even the brightest of doctors in the world. For more on the condition please kindly refer to a number of articles I have written before on the subject or any other trusted source.
In a nutshell, this is a condition affecting many people who had Covid, even those who just had the mild form of the disease, the ones who never even noticed they had any symptoms.
These people still experience debilitating symptoms weeks, months, some even years after they had the infection. By this time, these patients are Covid-19 negative. This is one topic I will keep coming to back to as it is one area that is still being studied and one that requires a lot of research.
CURRENTLY DIAGNOSIS IS BY EXCLUSION
Long Covid is a condition with seemingly an endless list of signs and symptoms from head to toe which can mimic any other illness. It is really very challenging to diagnose.
At the moment, diagnosis is mainly by exclusion. This means it is done by ruling out other diseases after running a number of tests for all the other possible causes of the symptoms and if nothing comes up as the most probable cause, then it is left as long Covid is the only reasonable cause.
However, this is a process that is not only time consuming but costly, as the patient usually ends up paying for all the necessary tests thought to be behind the said symptoms.
I know Zoena has spent a lot on tests so far and at times has to repeat some when she moves from one doctor to anther in search of an answer. More so, if the clinician is very busy and not so patient with the patient, they may miss the diagnosis all together.
Ideally, each patient must be approached as an individual and the clinician needs to perform a comprehensive history and physical examination to rule out serious complications and comorbidities as causes for symptoms. Physical, cognitive, psychological, psychiatric, and functional status needs to be evaluated in patients with persistent symptoms. This makes the diagnosis even more challenging.
THE DEFINITIFIVE DIAGNOSIS MIGHT BE ON THE WAY
It is for these reasons the University of California, USA and Cambridge University, UK are trying to come up with a blood test that will help diagnose long Covid.
The scientists are saying the test is expected to be finalised in six months’ time, sometime in 2022. The particular test, will be a blood test that will be able to detect a special substance produced by the T cells in long haulers.
T cells are a part of the immune system that focuses on specific foreign particles. Rather than generically attack any antigens, T cells circulate until they encounter their specific pathogen. (NB.I Will update as more is reviewed).
FAMILIES NEED TO BE SUPPORTIVE AND EMPATHETIC
The persistent symptoms associated with Long Covid are frustrating for patients who just want to be normal and to return to their previous level of function before Covid-19. Unfortunately, there are no clear answers for them at this time. The uncertainty surrounding Long-haul Covid-19 leaves patients feeling helpless and alone in managing their symptoms.
They usually complain feeling frustrated by the lack of assistance and empathy they receive from their family members and at times from some health care providers.
These were individuals who were previously healthy and independent, but now as long-haulers, have difficulty completing basic daily activities and are unable to work due to limited endurance and other symptoms. It is not an easy shoe to wear.
Please let us show long haulers the support they need, let us be empathetic and genuinely listen to them, they are not faking the symptoms. At times the only therapy I find myself giving Zoena is a listening ear, no matter how long her call is I always try to accommodate.
Indeed, even if all the other tests may come out normal, it doesn’t mean they don’t have a problem. And please this condition is not as a result of one being bewitched, don’t take the survivors battling long Covid “kuba n’ganga” (witch doctors).
This is a real medical problem that is still being investigated. Remember your lack of support or mistrust can lead them to more depression and unfortunately some may end up taking the “easy way” out – suicide.
And for you who is unwell and think is facing this problem, please go to the hospital. The clinician should eventually refer you to a specialist according to the symptoms you are presenting with.
Long Covid or long hauler syndrome is a phenomenon that will affect us all one way or the other at an individual and national even global level long after Covid-19 has settled down.
If we can help it, please let us avoid getting Covid-19 in the first place, because it has shown that even in its mildest form, the complications can be devastating and lifelong.
Please let us keep up the good fight. Yes together we shall be victorious.
ONE ZAMBIA, ONE NATION. UNTIL THEN, ALUTA CONTINUA.